Speakers for the PPI Workshop funded by the HRB

Public and Patient Involvement (PPI) Workshop funded by the Health Research Board  (HRB).

This 2-hour workshop will provide an introduction to Public and Patient Involvement (PPI) and discuss the value of developing partnerships between researchers and those with the lived experience of sight loss.

  • This will include a panel discussion to highlight the importance of the lived experience in research and bridging the gap between researchers and patients.
  • Our invited panellists include: Dr Laurence Fitzhenry (South-East Technological University, Waterford, Ireland), Gillian Stafford (PPI contributor, Rare Disease Patient Forum) and H Eric Hartman (Choroideremia Research Foundation).
  • The panel discussion will be followed by a social lunch.   

We are delighted to host the PPI Workshop at the Retina International World Congress on Saturday, June 8, 12:00 PM – 2:00 PM, Room location: Goldsmith Hall 1.

Many thanks to the Health Research Board  (HRB) for the support.

Please note that spaces are limited. If you would be interested in attending this workshop, please email riwc@fightingblindness.ie.

 

Facilitators:

Michael Foley – Civic Engagement for Societal Impact Manager for Trinity College Dublin

Headshot of Michael Foley

Michael Foley is the Civic Engagement for Societal Impact Manager for Trinity College Dublin. His role is to promote networking and collaboration with Trinity’s many civic partners, such as health services, local authorities, NGOs, communities and government bodies, in order to tackle societal challenges. Prior to this, he was Programme Manager for the Trinity PPI Ignite Office, supporting Public and Patient Involvement (PPI) in health-related research. Michael has been facilitating public processes for over twenty-five years as part of his work in the National Disability Authority, Age & Opportunity and now Trinity. He has also developed engagement processes and resources with organisations such as the Irish Universities Association, Health Research Charities Ireland and IPPOSI. With an MSc in Applied Social Research, Michael was the Research Module Coordinator on the MA in Mediation and Conflict Intervention in Maynooth University for a number of years. He has also worked as a copywriter and editor, with a particular focus on developing accessible material and Plain English.

Dr Cassandra Dinius – Patient and Public Involvement (PPI) Liaison Officer, Rare Disease Clinical Trial Network

Dr Cassandra Dinius headshot

Dr Cassandra Dinius is jointly appointed between Health Research Charities Ireland and Rare Disease Clinical Trial Network as a Patient and Public Involvement (PPI) Liaison Officer. Her role involves expanding patient, family, and public involvement in rare disease research. Cassandra is passionate about promoting access to science for all people. Her academic background includes a PhD in cognitive ageing and subsequent years working in non-pharmacological interventions for older adults, focusing on brain health and well-being. Cassandra is particularly interested in societal views on health and ageing and enjoys collaborating with diverse teams to advance the relevance of research.

Panellists:

Dr Laurence Fitzhenry – Principal Investigator of the Ocular Therapeutics Research Group (OTRG), within the PMBRC in the Department of Science, South East Technological University

Headshot of Dr Laurence Fitzhenry

Dr Laurence Fitzhenry is the Principal Investigator of the Ocular Therapeutics Research Group (OTRG), within the PMBRC in the Department of Science, South East Technological University, where he is a member of academic staff. He was the coordinator of the recently completed ORBITAL-ITN network and his research is focused primarily on the development and production of novel therapeutics to treat various chronic and acute diseases of the eye. This is achieved by developing new nano- and micro-formulations, investigating novel therapeutics and designing innovative drug delivery platforms to improve patient outcomes and quality of life issues for a range of ophthalmic conditions.

Dr Fitzhenryyis also interested in applying these technologies to other pressing societal challenges that include Covid-19 and antimicrobial resistance. An important pillar of Laurence’s research is bridging the gap between patients and researchers in the preclinical development of novel technologies and as such has organised a number of information evenings, a World Café, and round table events bringing patients, clinicians and researchers together to discuss topics such as Dry Eye Disease, Age Related Macular Degeneration and Diabetic Retinopathy.

H Eric Hartman – Director of Advocacy, Choroideremia Research Foundation

Headshot of H Eric Hartman

H Eric Hartman is a native of New Orleans. He was diagnosed at age 11 with Choroideremia(CHM),a rare inherited retinal degenerative disease. He spent 16 years working in banking before deciding to pursue his true passion as an artist in 1990. He has worked as a sculptor, impressionist artist and photographer.

Eric has 4 years of rare disease global patient advocacy experience.  He has spoken on three different continents and then doing cell has developed unique skills for traveling  solo with low vision.

He became one of the founding members of the Choroideremia Research Foundation in 2000. The CRF is an international patient support and research foundation. Eric has served as a board member and four years as CRFpresident. He stepped down from the board to become the Executive Director for 3 years. For the past 7  years, he is employed as the CRF Director of Advocacy.

Patient Engagement Experience:

  • many years engaging with the global CHM patient community, including presentations to patient group  England, Scotland, Netherlands, Germany, France, Denmark and Canada
  • CRF delegate to Retina International’s World Congress 2020 to present
  • representative to NORD, Global Genes, Haystack Project and Rare-X Vision Consortium
  • Volunteer mentor to the
  • Thriving Blind Academy

Regulatory patient engagement:

  • member of the CRF ‘s presentation team at the FDA and CRF‘s informational meeting with CBER.
  • multiple years of Rare Disease DAY  the FDA and NEI.
  • Multiple Patient engagement symposiums at the NEI and NCATS
  • Multiple years as a delegate to the Rare Disease Eeek on Capital Hill

Industry/Organization patient engagement:

  • American Society of Gene & Cell Therapy special committee member for ophthalmology gene therapy Tool Kit
  •   International Society for Genetic Eye Disease and Retinoblastoma (ISGEDR) patient presentation to the Genetics Study Club And the UKEGG, United KingdomEye Genetics Group
  • CRF advocate representative to 4D Therapeutics, Spark Therapeutics, Roche, BIOGEN and Nightstarx

Gillian Stafford – Public and Patient Involvement (PPI) contributor, Rare Disease Patient Forum

Headshot of Gillian Stafford

Gillian Stafford lives in Trim Town, County Meath, and is living with Retinitis Pigmentosa (RP). Almost 20 years after receiving a diagnosis of RP, Gillian was informed she also has another condition. In the end of March 2022, she was informed that through her participation in the Target 5000 program, they found she carries the responsible gene for Bardet Biedl syndrome.

Gillian has a BSc in social science and an MSc in social policy and rights. She has spoken about her lived experience of sight loss at a number of conferences and is an experienced Public and Patient Involvement (PPI) contributor with a key interest in promoting the patient voice in health research. Gillian is also an active member of the Rare Disease Patient Forum and the National Rare Diseases Steering Group to support the development of the new National Rare Disease Strategy for Ireland.

Gillian has accepted her sight loss and in her free time you might find her cooking, listening to audio books or going for walks.  She is part of a drama group called sightless Cinema where all members are visually impaired or blind. She is also part of Independent Living Movement Ireland and involved in working groups trying to change policy around barriers in society for people with disabilities to help them to live independently. She aspires to use her voice to help other people with sight loss and states:

We are capable of doing whatever we want to do, there are limitations but there are ways to go around it. – Gillian Stafford